God is our merciful Father and the source of all comfort. He comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us.

(2 Corinthians 1:3b-4, NLT)

Friday, June 14, 2013

Well, the answer to Faith's mystery post-op illness is simple- she has a UTI. Seriously. The surgery she had on Monday was to help keep her from having them, but apparently it gave her one as a parting gift.

It explains the throwing up, the kidney/back pain, the decreased appetite, the decreased urine output... Basically everything that's been going on since Wednesday night. The thing that bothers me is that I spoke to the urologist's office multiple times, and never once did they mention that it could be a UTI!

Thankfully, it is easy to treat, and after the IV fluids and her first dose of antibiotics, Faith is feeling much better. This is the first she's wanted to play since Wednesday, which is great to see and makes Selah happy too!

In the ER at one of the Children's satellite locations near Dave's parents' house... We rarely go to the one at the main hospital because the wait is always so long, and at the satellites we are triaged and in a room usually within 10-15 mins. I dropped Noah and Selah off with Dave's parents on the way here, so that's another benefit.

Faith has continued throwing up, and yesterday didn't eat anything and slept almost the entire day. Yesterday we had to give her an enema (fun, fun), which did have results, but didn't stop the vomiting. This morning when she threw up, it had streaks of blood in it.

I called the urologist's office and the GI doctor's office this morning. The urologist's office ordered Zofran and wanted us to push her to drink lots of fluids at home; the GI's office said with her history we should go to the ER. Since it's Friday, and since the urologist's office hasn't seemed to have a good understanding of Faith's gut history, I was far more inclined to agree with the GI's office.

They have already done gut X-rays, and finally (5 sticks later) got an IV started for fluids. They tested her pee (what little bit there was) and it came back positive for bacteria, so they need to do a culture, but we'll probably have to wait until the fluids go in so she can actually pee. She didn't even have tears to come out when she cried the last two times they poked her for the IV!

The X-rays looked ok to me, just lots of air in her guts, but I'm waiting to hear what the doctor says. He said he could feel stool in there when he palpated her belly, which someone who's had Miralax and an enema (and hasn't eaten!) in the last 24 hours probably shouldn't have...

SO... Current prayer requests would be for her to feel better when she gets hydrated, with no more vomiting; for her (kidney?) pain to go away; for her to pee enough for the culture test; and for the infection to go away.

Wednesday, June 12, 2013

Today started out awesome for Faith, she got up this morning and was acting almost normal! Other than moving slower than usual, she was her normal, happy, playful self. Unfortunately, in our excitement over how well she was doing, it didn't occur to us that she was totally overdoing it.

Tonight we paid the price for our oversight... The kids and I got home around 7 pm, after stopping briefly at my parents' house (Dave had to work tonight, so he left his parents' house earlier this afternoon).

While at my parents', Faith threw up. Then when we got home (less than a 5-minute drive), she threw up in the driveway. Since then, she's thrown up probably another 5 times...

Between all of the throwing up, and trying to get Noah and Selah fed and put to bed, Faith didn't get her pain meds on time. Thankfully, I got her to take some anti-nausea medicine and eat a few Cheerios and the throwing up stopped long enough to get her medicine down.

I am really impressed with how well the meds are working, especially now that I've seen how uncomfortable she is when they wear off! She was in quite a bit of pain, not wanting to move because of her incision, and complaining of back pain from the epidural. It didn't take long after she had her meds for her to relax and fall asleep, thank goodness!

I set up a temporary bed in our room for Faith, until she is feeling better and is less likely to need us in the night. Normally, Faith and Selah share a room, so this way Selah will be able to sleep through without being woken up by Faith.

I was pretty worried with the throwing up that she might need to go get checked out, but since she stopped I think she is alright. I actually am wondering if the throwing up was caused between the ride home, the heat (it was 90+ degrees here today), the smoke from the wildfires, and the pain from her meds wearing off...

Tomorrow she is allowed to take a bath and soak the dressing off of her incision. I am curious to see what it looks like under the gauze. In 4 weeks, she'll have a follow-up appointment with a kidney ultrasound to check things out and make sure she doesn't have any kidney scarring.

Please pray that her recovery continues to go smoothly, with no more nausea/throwing up, and that there is no scarring on her kidney ultrasound when she has that.

Tuesday, June 11, 2013

So, we got her to sit up and she didn't cry! But then we made her stand, and that didn't go over well. One major meltdown, a new pull-up, and a suppository later, she is settled back in bed watching VeggieTales Jonah. Here's hoping that the next time we try standing goes a little better!

Faith is doing better than she was earlier, she even ate some of her lunch. Her pain is being controlled much better, unless she moves... The anesthesiologist came in late this morning and took the epidural catheter out of her back, so the only thing left in her is her IV.

Since the extra tubes came out, we got her cleaned up and changed her into one of her own nightgowns I made for her. Then awhile ago, she had a few visitors who brought her a new kitty (thank you Aunt Steph & crew!).

Earlier this morning, Noah had an appointment at one of the doctors' offices here, so on the way back to her room he and I stopped in the gift shop on the adult side of the hospital and miraculously found her the only unicorn in the whole place. (Since her last surgery in Boston 2 1/2 years ago when they took her feeding tube out, she has gotten a new unicorn each time she's had any kind of unpleasant procedure.)

The nurse practitioner came in a little bit ago to check her out and see if she could go home today. She said Faith looks great, but she would really like her to get up and moving a little bit before she'd feel good about releasing her. She helped me get Faith to standing, but Faith wasn't enjoying it and decided that if she has to stand to go home, she'd rather just stay here...

One concern that I have had since last night is that they don't seem to be taking Faith's history into account when it comes to things like her eating... The nurses have said her bowel sounds aren't that great, yet she is on a totally normal diet. The anesthesia makes the gut groggy and less active, and then the meds she's on are constipating too, so for her to be putting food in when there's no indication that anything is trying to come out makes me nervous... The nurse practitioner ordered a suppository, so hopefully that will get things moving.

We did get her to sit up and play Candyland with Daddy, and she isn't crying in pain, so maybe we'll be able to get her standing soon... (I think she has her own rules... like if you get a card with 2 green squares, you just pick whatever 2 you want as long as they are close to the finish!)

Current prayer requests would be for her pain to subside, for her to be able to get up and take some steps, and for her gut to start moving. It would be wonderful to be released today...

Overnight went well; Faith got some good sleep. Her epidural was turned off around 6:00 this morning, and the doctor was in around 6:45 to take out the catheter and the two stents.

She was doing really well at first, and asked for breakfast even (she requested bacon and eggs). For about the past hour though, Faith is in quite a bit of pain from bladder spasms.

The nurse gave her some pain medicine and some other medicine to help with the spasms a little while ago; just waiting for those to kick in. In the meantime, she has a whole tray of food she refuses to eat, a cup of juice she won't drink, and is miserable and begging to go home...

In order to go home, she has to drink 2oz/hr and pee good amounts, and her pain needs to be controlled by the meds she was given this last time.

Please pray for the bladder spasms to stop and for her pain to be relieved!

Monday, June 10, 2013

We are in Faith's room, and she is eating. She did need some Zofran; she started out with a couple of Popsicles but they didn't stay down very long.

Since food service ends at 7:00, we sort of preemptively ordered her food, so she's got a nice tray of Mac & Cheese and chicken tenders that she doesn't feel like eating yet, and she's munching on cheese & crackers and sipping a chocolate milkshake, complete with whipped cream and sprinkles.

Dave's parents took Noah and Selah home, and Dave will be leaving here in a little bit. It has been a long day!

Prayer Requests:

Faith's epidural pump keeps alarming (and then stopping before the nurse comes in), for no apparent reason. Please pray that either they figure out what is causing it, or that it just stops!

Please pray for Faith's pain to be minimal.

Please pray that she won't have anymore nausea and will be able to eat and drink as much as she wants/needs to. If she does a really good job drinking, there's a chance she could get released tomorrow... which would be a pretty great birthday present for me! ;)

Faith has an epidural, but I guess needed some extra pain meds when she first woke up, so they gave her some Fentanyl and Morphine. Unfortunately, they didn't bring us back until after that, right about the time the meds were kicking in, so we didn't get to see her really awake.

We are still in post-op, waiting for them to take us to her room. Noah and Selah both are anxious to see her, hopefully she will wake up at some point so they can see her awake before they and Dave head back to his parents' house for the night.

Prayer requests: a peaceful awakening, pain that is easily managed with the epidural, and no painful bladder/ureter spasms.

Both doctors have been out to tell us things went well. The anesthesiologist said she wasn't awake yet. She has an epidural for pain overnight, because she has a catheter and two stents (one in each ureter) that will be in place until tomorrow. The urologist expects her to be released on Wednesday, but said she can eat whenever she wants to, which will make her happy :)

I will try to post again when they take us back to see her, otherwise I definitely will when we get into her room.

I went back with Faith about 20 minutes ago. She got to sniff a skittles-scented mask, and then fell asleep with only a few tears and a couple of good hugs. The surgery should last about 2 hours.

We can feel your prayers, thank you! Current prayer requests are for everything to go completely as expected, for waking up to be easy with no issues, and especially prayers against bladder/ureter spasms in recovery.

Faith is allowed clear fluids until 10:30 AM, so breakfast today is chicken broth, jello, and apple juice. Except Faith apparently isn't a fan of jello, so it's just chicken broth and apple juice. I'm guessing she will be a hungry girl tonight, since the surgery is supposed to last about 2 hours, and I'm sure it'll be awhile before they let her have anything after...

Prayers for no low blood sugar, no rumbling tummy, etc are greatly appreciated!

Sunday, June 9, 2013

Since Faith isn't allowed to eat anything real after midnight tonight, and isn't having surgery until 2:30 PM, she, Dave, and I are having a little "slumber party" of sorts... It is 10:06 PM and she is eating pizza and ice cream, getting ready to watch a movie (and hopefully have another snack or two!).

The anesthesiologist called me earlier tonight to see if I had any questions, and told me that because of some new HIPAA thing, they don't release the medical charts to him until the day of! Imagine his surprise then at learning that this will be Faith's 11th time going under general anesthesia... That policy doesn't make much sense to me, especially for a kid with a pretty complicated history... You'd think they would want the doctors to be as familiar as possible with their patients' histories. Thankfully, the only issues that should be of concern to him are her lack of good peripheral IV access, and the fact that most adhesives basically burn her skin off.

We have to be at the hospital for pre-op at noon, so it is going to be a long day... Hopefully we manage to get some good sleep tonight. Thank you to everyone who is keeping Faith (and us) in their prayers, we can feel them!

Saturday, June 8, 2013

Total site visits:

Welcome to Faith's Place!

This is Faith's Place. Faith is a gorgeous little girl who had a long recovery from being born with a serious birth defect called gastroschisis (she had a hole in her abdominal wall and her intestines were on the outside at birth). Her intestines suffered some damage, most likely from being exposed to the amniotic fluid before she was born, and didn't work like they should; she was diagnosed with functional short bowel syndrome at about 4 months old.

Faith was born November 13, 2008, and spent her first 127 days in the NICU at Denver Children's Hospital. Because her intestines were not functioning, she was not able to receive nutrition in the normal way through her stomach and intestines, so she was on IV nutrition (TPN and Intralipids) during this time.

As a result of being on TPN for such a long time, she suffered liver damage to the extent that her doctors in Denver believed she should be evaluated and listed for a small bowel transplant. However, with a survival rate of only 50% at 5 years post-transplant, we weren't ready to take that step. Instead, we did considerable research on our own, and found out about an experimental treatment for babies with TPN-associated liver disease (TPNALD) called Omegaven, which was run by Children's Hospital Boston.

On March 24, 2009, Faith was admitted to Children's Hospital Boston, and became Omegaven baby #115. After only 30 days on Omegaven, Faith's direct bilirubin level (an indicator of liver health) had already dropped from 6.7 to 2.0, including an expected spike to 8.0 about 2 weeks after starting Omegaven treatment. Less than 6 months after starting Omegaven, she was fed 100% through her stomach (enterally), getting large amounts periodically during the day (bolus) and continuous feeds over night, and her liver function test results were *perfect*.

Her central line (a permanent IV line in her leg through which she received her TPN) was removed on September 16, 2009, after almost exactly 10 months to the day of having a central line, without ever having a line infection!

She learned to eat and drink by mouth, and by 18 months old, she was 100% orally fed! Her g-tube was removed in December of 2010, making her officially tube-free for the first time in her life. She is now enjoying life as a "normal" preschooler, with very little medical follow-up, and other than her scars, no outward signs of any of her journey to this point.

If you are new to Faith's blog, click on "2008" in the archive list, scroll to the bottom of the page, and work your way up to read her story from the beginning!

Search Faith's Place

Statistics to consider...

-The survival rate of children with direct bilirubin levels greater than 3.0 for 3+ months is only 22%. (Faith's direct bilirubin levels were greater than 3.0 for about 4 months.)-The survival rate of children on TPN for longer than 1 year is only 10%.-The survival rate of children who receive a small bowel transplant at 5 years post-transplant is only 50%.-The survival rate of children, with a history of TPN-associated liver disease and direct bilirubin levels of at least 2.0, on TPN, with Omegaven replacing Intralipids, is 98%!!!!!!

Education is the key to saving the lives of children with TPN-associated liver disease. The sooner these children receive Omegaven, the better their chances are of a "full" recovery (any damage that is done stays done, Omegaven does not reverse scarring in the liver).Healthcare professionals who know about Omegaven and neglect to tell their patients it is an option, in my opinion, are failing to uphold their responsibility to do whatever it takes for their patients' health and well-being.If your child is suffering from TPN-associated liver disease and you have found out about Omegaven and its benefits on your own, and your doctors are giving you the run-around when you bring it up to them, it's time to change doctors!! (believe me, I've been there) Omegaven WORKS, as long as it is not started too late!